Objective: To determine the death rate of patients who died in our pediatric intensive care unit after a decision to withhold or withdraw life-sustaining treatment was made and to describe the epidemiologic data, clinical (acute and chronic) conditions, end-of-life care, and decision-making processes corresponding to these patients.
Design: Long-term retrospective review of patients' charts.
Setting: Mixed university-affiliated pediatric intensive care unit.
Patients: Patients younger than 18 yrs old whose deaths occurred after life-sustaining treatment was withheld or withdrawn.
Interventions: None.
Measurements and main results: Epidemiologic and clinical data, the treatments received, the decision-making process, and the end-of-life pathway were evaluated. Ninety-seven of 311 deaths occurred after a medical decision to withhold life-sustaining treatment. Among these patients, the most common reason for admission was respiratory failure (44 of 97), followed by cardiopulmonary arrest and sepsis. In 50 of 97 there was a previously known neurologic condition before admission, 11 of 97 had a neoplasm or hematologic malignancy, 10 of 97 had a congenital heart disease, and 8 of 97 had a neuromuscular disease. The most common action for forgoing life-sustaining treatment was withdrawal of treatment (chiefly respiratory support). The median time for deciding to withhold or withdraw life-sustaining treatment was on day 3 of admission. A total of 85 of 97 deaths occurred within 48 hrs after the decision was made and action taken. The decision to forgo life-sustaining treatment was proposed by the family in 14 of 97 patients, and there was an explicit agreement between the medical staff and the patient's family in 88 of 97. In all cases, palliative analgesic/sedative treatment effectively maintained the child's comfort.
Conclusions: Withholding or withdrawing life-sustaining treatment was a frequent mode of death in our pediatric intensive care unit, occurring at a rate that falls in the midrange of literature values. The level of the parents' involvement with the team in the decision-making process, which was documented in 88 of 97 of the medical charts, was very high. Patients with chronic neurologic diseases or with severe cognitive sequelae constituted the main group in which the decision to forgo life-sustaining treatment was made.